Childhood Cancer Awareness Month

I hope you all have been following us on our Caringbridge. It's so much easier to update.

Tomorrow is the beginning of Childhood Cancer Awareness Month. Check this site to see what you can do to help...

http://www.teamunite.net/

and a direct link to sign the Childhood Cancer petition...

http://www.thepetitionsite.com/1/CureChildhoodCancer

PLEASE pass that along to everyone you know. If not for me, for this face...

More chemo

Just got back from clinic...

Xavian has gained some weight back. This is good considering he won't take any liquids by mouth. This past week I did get him to start eating baby food though. Dr Reddy said we may need to have occupational therapy work with him on the liquids. She said that after some babies don't eat a while they need to relearn. Not sure how I feel about that though because he is eating baby food and will suck on his paci all day long. I think he has gotten lazy and use to the feeding tube. We will have OT/PT come work with him on some other skills (sitting up and grasping things).

Dr Reddy wants to make sure Xavian gets a total of "at least" six rounds of chemo. We've had three so far. Plus half of one that didn't get completed :( She wants to start the fourth as soon as possible. She said she'd give us another week home though. THANK YOU! So, we get admitted to Children's here in Birmingham, AL on August 3rd. The treatment will last a week. We will then have the MRI sometime after that when his numbers come back up from taking a beating from all the chemo.

Of course if we think Xavian has had enough, we could always stop the treatment. I'm not sure I could stop them. As rough as the chemo is on his little body it is working. Please pray that these last three rounds will kill ALL cancer cells and we can be done with chemo by his first birthday! It's hard to believe that in two days Xavian will be eight months old and he was only eight weeks when all this started. So unfair for such a small child! I really could go on but, I will spare you. Please pray for a cure! Please pray that Matt and I will continue to hold on to our faith and sanity during these next three months. It can only get easier right?

Well, I need to finish eating my lunch and go get Dante. I will continue to keep you faithful readers and prayer warriors up to date. Feel free to sing our guestbook and leave words of wisdom, encouragement, and prayers...the sure do help!

You can follow us more at our Carinbridge site (I update it more often) here...

http://www.caringbridge.org/visit/xavianbecketthall

Going home?

Wow, three days behind. Sorry about that. Matt was here with Xavian all weekend while I spent the holiday with Dante. It was nice to have a little break and get some much needed rest.

Friday night wasn't so great for Matt though. They actually increased the amount of morphine Xavian was getting. He was obviously in some pain. The neurosurgeon even came by and said he was concerned because he should be in that much pain. So, they did a CT to make sure the shunt was where it should be and working the way it should be. Results, it was right were it needed to be and was working just fine.

Saturday I think Xavian pretty much rested and slept all day. Matt had a good view (from the room window) of the fireworks over Red Mountain. Sunday morning Xavian had his feeding tube put back in. They started his feeds off slow and bumped them up every six hours until they got them to where it needed to be. He is no longer on his TPN (yay!).

As I type Xavian is getting red blood. I am hoping this will give him some pep. He is still a little irritable but hasn't had morphine since early this morning. He even smiled a little! Once he finishes the blood he won't be hooked up to anything except his feeds. I am hoping this means we can go home tomorrow or Wednesday. In fact, our nurse just came in and said the neurosurgery nurse is coming by to teach me about the shunt care. Maybe when this is all said and done I can be a nurse too. Just kidding. I know the nurses go through some tough schooling, but gosh I feel like I take over once we get home.

Thanks for all your continued prayers. Some specific prayer requests...

*continued comfort for Xavian
*NO infection from the shunt
*NO new tumor cells (causing us to have the shunt)
*an uneventful stay at home
*A CURE FOR CHILDHOOD CANCER

and specifically for this little girls family...
http://www.caringbridge.org/visit/alexabrown

Surgery

Surgery is a go...first thing Friday morning (tomorrow). Xavian's ANC was 2082 this morning! Yesterday it was 736. Thanks for all those prayers...they worked! His platelet count is 45. So, he is getting platelets right now and will get some more tonight at 10. They will check his counts in the middle of the night to see if he has held on to the platelets and then will decide if he needs more before surgery. We are really ready to get this surgery done so that the pressure can be relieved and Xavian will be more comfortable.

Dr. Rozelle explained to me this morning that the catheter will be placed on the right side of Xavian's head (where he had previous surgery to remove the tumor). It will then go down behind his ear and down to his stomach. There, the fluid will be absorbed. He is at greater risk of infection. I don't like to use statistics because my son is not a number...but, he said his chances are 1 in 10 in getting infection because of the chemo he has gotten. If Xavian gets an infection they will have to go back in, remove the shunt, place an external drain, give him antibiotics and then replace the shunt after the infection is cleared. This would be anywhere from 7 to 10 days (all in the hospital of course). He said with babies (especially those on chemo) are more likely to have more surgeries months or years after the first procedure. This can continue up to two years.

Most kids can go home 24 hours after this kind of procedure but we aren't sure what will happen with Xavian. Talking to our hem/onc doctors we will be here through the weekend. They will also place the TP tube back so that we can get him off TPN and get his nutrition back to where it needs to be.

We still are not sure what caused the obstruction in the fluid draining. The surgeon will take some of the fluid and send it to be tested to make sure no tumor cells have developed. The other reason is that the cyst could have caused everything to shift over and obstruct the pathway. Praying for the later.

Tomorrow will be a month since we've been here. The first week Xavian had his third round of chemo. We went home for 1.5 days. Since then we've been here dealing with low counts and hydrocephalus. Praying we can go home next week.

Immediate prayer request
1. Smooth surgery tomorrow
2. Knowledge and skill for those taking care of Xavian
3. Smooth recovery, no complications (ie: infection)
4. No new tumor cells
5. Cure for childhood cancer

I am Back

Back here at CH. Xavian looks better. Matt told me he got him to take 8mL of formula today (30mL = 1 ounce). That's such an improvement.

He is still getting nutrition from the TPN. It is still important to try and keep him eating on his own though. There was no CT today and there won't be one tomorrow. Neurosurgery had decided the shunt needs to be put in regardless. So, there really is no need to do another CT. We are still monitoring his heart rate, eyes and fontanelle. We are all hoping and praying that his counts are up so that can be done the end of this week. I haven't seen a print out of his counts just yet but I think the ANC is 500. Two days ago it was zero.

Right now I want to thank Mel and Rita (two co-workers of Matt). They have volunteered to bring Matt and I dinners when we stay here with Xavian. Also, thanks to all the church groups that made us dinner when we are at home. They all have been a wonderful blessing. It is such a stress reliever when you don't have to worry about what you are going to eat. "Living" at the hospital can also get expensive if you are having to eat every meal in the cafe. So, thanks Mel and Rita and all the others we have not had the chance to meet for meeting one of our needs during this time.

Please pray for...
1. complete healing for Xavian
2. numbers to continue to increase rapidly
3. comfort for Xavian
4. less and less fluid build up
5. a CURE for childhood cancer
6. other families fighting this disease

CT and Surgery?

What a journey this has been. Yesterday Xavian had a CT done because he continued to be fussy and the vomiting was not easing up. The CT showed his left ventricle was larger than the MRI that was done 3 weeks ago. It is larger because something is obstructing the CSF from draining properly. The way to solve this problem is by putting a shunt in Xavian's head to drain the CSF (to his belly). The problem is they can't do the surgery because his white count is pretty much zero (0.08). There is a risk of infection when his counts are this low if they were to introduce something foreign into his body. To send us home his counts can be 200. To do the surgery they have to be to a normal level (between 4,300 and 10,800). Because Xavian has had 3.5 rounds of chemo his bone marrow is pretty much shot. They tell me it could take longer for counts to get where they need to be. Time is not on our side here...

We will continue to monitor Xavian by measuring his head circumference every day. The beginning of next week another head CT will be done to see if there is any more change. If he worsens they will have to stick a needle in through the sutures (joints between the plates in the skull) to pull some of the fluid out. Instead of sticking the needle through the ventricle to drain the fluid they will stick it in the cavity that was created by the tumor to drain fluid from the cyst. This will prevent any damage to the healthy brain tissue.

Right now, Xavian will be on scheduled morphine to keep him comfortable. He will continue to get the maximum dose of Leukine to help boost his white count. Other than those we will play the waiting game, again.

Please pray that Xavian will find comfort with the meds and rest peacefully. Pray that his counts increase quickly. Pray for peace and comfort for Matt, Dante and myself. Pray that I or Matt will know what to ask our surgeons/doctors so we can fully understand what needs to be done.

No more feeding tube

Yesterday afternoon the nurses pulled Xavian's feeding tube, per doctors orders. The doctors had the pleasure to see him throw up all the mucus junk he'd been doing for several days. They think the tube was making him gag and extremely uncomfortable. Because he is still not eating anything PO (by mouth) they will start him on TPN (iv nutrition) this afternoon. So far, this morning Xavian has gotten platelets. This is expected. He is also not feeling very well. Very fussy! He'll doze off then wake up and can't get back to sleep. This makes him very agitated. I think he has some teeth trying to come in. That, combined with low counts make for a very unhappy 7 month old. Oh, that reminds me...Xavian is 7 months today. It's hard to believe we have spent 5 months, now, in and out of the hospital. Seems like it's been mostly IN.

We still don't know when another MRI will be ordered. This will determine when and if another round of chemo will be done.

Thanks to all that have kept our family in prayers these past 5 months. Thanks to those that have helped either with finances, food, or watching Dante when we can't be there. You all have made this difficult time that much easier. If that makes sense.

Xavian has finally settled down. So, I think I am going to take a nap too.

No clever title here

Yesterday was pretty uneventful. Xavian had the feeding tube put back in. Matt had to be with him then because I was still on my way here with Dante. He then slept pretty much all day. He hasn't had morphine since 10 am, yesterday. Still won't eat. Still throwing up. They actually decided to turn his feeds off during the night. Once they turned them off he stopped vomiting. It is still hard to sleep though because every time he starts coughing he then gags. I then jump out of bed to make sure he's not throwing up. I think he is having to get used to the TP tube all over again. This one is actually bigger than the one he had last time. They weighed him last night too and it seems that he has lost a little weight. Considering this is the third round of chemo and he hasn't lost any weight up until now, we're lucky. I am just afraid that he will forget how to actually eat from a bottle. He is sucking on his paci like crazy though. Maybe that will help. He will be seven months tomorrow and hasn't even started baby cereal yet! Arggg! STUPID cancer! STUPID chemo drugs! It seems that when he gets better and his counts come up he gains a few mile stones only to get sick again and slide back. It's all very frustrating...

I spoke to one of the doctors this morning and they are probably going to just turn his feed on really low and leave it there all day, instead of turning it up by 5mL every four hours. Hopefully this will keep the vomiting at bay. I had a lot of breast milk stored up from the times I had to pump in the past. I'm using that for the feeds in hopes that will get his counts up quicker. Who knows...breast is best, right?

Please pray that Xavian will begin either eating from a bottle or at least tolerating his feeds. He really needs the nutrition. Pray his body will start making bone marrow again, his numbers need to come up so we can go home. Pray for Matt as he is going back and forth from work, the hospital and home with Dante. Pray for Dante. I think all this is starting to wear on him too. He is always asking for "baby brother". Oh yea, Xavian is getting blood today and probably platelets tomorrow. So, thanks to all those that donate. Those that don't and could, you should. Take a look at this link below and do what you can to help us and all our "c" friends.

I found this site on another CB and find it very interesting...

http://teamunite.net/home.html

STRATEGY #39

"When I despair, I remember that all through this the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of it--always." –Author Unknown

• Swine Flu 2009: 15 confirmed U.S. deaths as of June 1, 2009 at 2:41 PM
• Childhood Cancer 2008: OVER 3,000 children dead in the U.S.
• Swine Flu Government Funding: OVER $1.5 BILLION
• Childhood Cancer Act Government Funding: $150 MILLION in funding spread over 5 years

Stand Up 2 Cancer Awards $73.6 million to 5 Dream Teams

Thank you to Brenda Everson-Wiesman (TEAM DREW W) for the article below!

The five Dream Teams are: Epigenetic Therapy, Women's Cancers, Breast Cancer,Tumor Cells Chip, and Pancreatic Cancer. No mention of childhood cancer as of yet except possible pediatric innovative research grants to be awarded later. Things we can do:

1. Go to http://www.standup2cancer.org and read the announcement about the Dream Teams being awarded the money recently. Log in a comment.

2. On the same site, go to the "Magazine" and then the SU2C blog and leave a comment for Lisa Paulsen who wrote "Outpouring of Support Gives Hope Against Cancer." Lisa is the President and CEO of the Entertainment Industry Foundation (EIF). Ask for children's cancers to get their own show like I did if SU2C is not going to give pediatric cancers much funding.

3.Go to the American Association of Cancer Research site at www.aacr.org and use the "contact us" button to email this group who is the scientific arm of SU2C. Ask why pediatric cancer was not included in one of the Dream Teams.

4. Go to http://www.cbsnews.com and email Katie Couric under Couric and Co. about the need for special reporting about how childhood cancer is only receiving 3% of the research funding. Katie is also on the executive board of SU2C.

5. On the Katie Couric site you can add a comment to her story "Disparity in Cancer Research Funding." Pediatric cancer was not listed but breast cancer was listed as one of the ones getting the most research money. Of course we all want to see an end to breast cancers and all cancers but... we want more money for the childhood cancers which are under funded.

6. If anyone has any contacts to the SU2C show, you could ask them why pediatric cancer was not included when the stories and photos of the kids were used. Also the team Crushing Kids Cancer raised $47,000 for the show and was the top team.

7. Any other suggestions welcome. I know some of this is a re posting of earlier items this week but I feel that it deserves it's own discussion as the earlier info was not clear, my fault.

8. SU2C just announced a new bunch of celebrities to help the cause. Sounds like a new show might be in the works. Maybe in Sept. again? How can we get them more involved with our cause? Can we get them to join PAC2 (ED: or Team Unite)? Can they say that Sept. is childhood cancer awareness month on the show? Will they be contacting parents of kids fighting cancer and if so, what should be our response? Ideas?

NOW IS YOUR CHANCE TO
DO SOMETHING!!!

September is Childhood Cancer Awareness Month and September 13th is Childhood Cancer Awareness DAY!!! HELP US IN OUR UNIFIED EFFORT TO CONQUER CHILDHOOD CANCER. in the words of our own, TEAM ALEXA - “CANCER, YOU'RE FIRED!!!”

Anyone can help promote childhood cancer awareness and research. Do you have success stories of how you’ve made a difference? Please share your ideas on how to get the word out that September is Childhood Cancer Awareness Month and that the 13th is Childhood Cancer Awareness Day. Join us in our unified effort. Together we can raise awareness for September and of course; AWARENESS = FUNDING for RESEARCH = A CURE!!!!

Easy GOLD RIBBON CAMPAIGN!!!

Start by wearing a gold ribbon or awareness gear yourself! Anyone with ribbon, scissors and glue can make them or you can order them on line. Better yet, organize a group of volunteers to make gold ribbons that can then be handed out at events with a flier attached stating the reason to wear the gold ribbon (symbol for childhood cancer).

Please share any gold ribbon designs or campaigns you have created on our board at http://teamunite.net/forum/or by email to admin@teamunite.net.

If you need a source for September gear, please visit www.cafepress.com/teamunite today to order your childhood cancer awareness items! Please note that Team Unite is not a fund raising group. We give 100% of the proceeds from the sale of the September gear to support childhood cancer awareness campaigns.

Please share information and news. Did you hear a story on the news or read something on line or in print? Please share that information at http://teamunite.net/forum/. We need to know who out there is helping promote childhood cancer research by airing or writing stories having to do with our fight! As a unified group we must each reach out and thank these people and encourage more coverage!

The waiting game

Xavian hasn't done very well this weekend. I seems that he is in more pain. Of course it's hard to tell because he is only 6 months. Every time someone goes to touch him or pick him up he gets real tense and fusses. The doctors decided to change him to scheduled morphine every three hours. This seems to be helping. He does sleep more but when he's awake he seems to be more comfortable. The do have him on the sat machine to monitor his O2. His levels have been fine though (99-100).

I spent Friday night and this afternoon at home with Matt and Dante. So, when I got back the nurses let me know the doctors wanted to go ahead and put the TP tube back down since he hadn't eaten enough. But, I told them I was worried that his platelets were low. They checked to see what they actually were. I was surprised they hadn't already given him platelets when they came back and said they went from being 20 on Friday to 8. The hospital was waiting to get a shipment of platelets and blood from Red Cross. Once that gets here hopefully he can get some and then they will put his TP tube back down so they can start feeds again.

It's pretty much just a waiting game at this point. His bone marrow has taken quite a beating after the 3.5 rounds of chemo so it will take a little longer for his counts to come back up.

Thanks for the continued prayers.

Home away from home

We are back. At the Chilton (Children's Hospital) that is. Room 439 this time. We were discharged Friday morning and had a good time at home until Xavian started vomiting and not eating. Saturday night Matt and I were giving Xavian his meds and starting his nightly feeds when he threw all his meds up. His feeding tube started coming up too. We decided we couldn't wait until our clinic visit on Monday to get him checked out. Matt said he would take Xavian to the ER while I stayed with Dante because he was already asleep. We called the on call nurse to let her know (we had already talked to her earlier that day). She said she would call the ER to let them know we were on our way. Well, when Matt got there she had not called yet. In fact, as far as we know, she never called. She had a good 30 minutes to call. ARRRGGG! That really made me mad. I still have to talk to our nurse about that. Matt said that the doctors in the ER said that his glucose was low and we did the right thing bringing him in because at the rate he was vomiting he would have been dehydrated by Monday. They also said that he looked good for having gone through 3.5 rounds of chemo. Once they started the bolus (fluid) he had a surge of energy. They also decreased his feeds to 5mL/hour throughout the whole day.

I got to the hospital Sunday afternoon to trade out with Matt and could tell Xavian was feeling much better. He was moving all around and talking. He even spent a lot of time with the nurses at the nurses station. They wore him out because he took a good nap.

This morning the doctors decided to increase his feeds to 10mL/hr. They will continue to increase the feeds and decrease his iv fluids as long as he tolerates the feed. He is also getting blood as I type because his hematocrit was low. They also had to add potassium to his iv fluids because that was low as well. His platelets are low but he is not getting some today. Maybe tomorrow. He has not had fever so that's good. But, the doctors seem to think that he will because his white count is sooooo low. So, looks like we will be here for awhile. I am praying that it won't take as long for his white count to come back up so we can go back home.

All this back and forth from home to hospital is so taxing on my sanity, sleep, health and every other aspect of life in general. I really need a whole week to catch up on sleep but will take a day (if I could get it). We still don't know what the future holds for Xavian when it comes to more treatments or not. As soon as we know something we will update. I tend to update the CaringBridge site more because it's easier to get on and just post a little update. You can follow it here...

http://www.caringbridge.org/visit/xavianbecketthall

Please pray for...

1. Rest and Peace for us all

2. Xavian's white counts to rise

3. No fever

4. Xavian's complete healing

5. Other families fighting this stupid illness (cancer) together

A rough night

Last night was pretty rough...this round of chem seems to be kicking Xavian's butt and making him sick. He has been on feeds at night for 10 hours. Last night they turned them down from 38mL/hr to 20mL/hr. After he continued to get sick they finally shut the feed off.

Even before all that Xavian had a crying fest for about an hour. Tylenol, Benadryl, Orajel, Zofran...nothing seemed to help. So, I just cried right along with him. I am sorry for our neighbors if he kept you up. On top of that I had a migraine. My aunt came to the rescue and stayed here with me. She got here just in time for me to run to the bathroom and get sick. Thanks Aunt Nawnie...

We have started today's chemo drugs. The Dr. wanted to start earlier today in case of any reactions he may have. Tomorrow he will be getting Cisplatin (the one that caused some of his hearing loss). They've decided to cut the does by half. The Dr explained that it is still a pretty heavy dose and his numbers will still come down. Once we finish on Thursday he will get fluids the rest of the day and through out the night. Friday morning I am hoping we will be able to go home (for the weekend at least). I expect we will be back here next week for low counts or fever or some other side effect.

I continue to pray that this is the last round Xavian will ever have to do. Also, that once we start his feeds back up that he won't throw up as much. I pray that he will start to eat more on his own during the day as well as no mouth sores. I ask that you pray with us in these things as well. Thanks so much!

An update on Dante...He had his two year check up yesterday and is doing great beside the little stomach virus he has. He isn't running fever or acts as if he feels bad either. He will just throw up and then go about his business. He weighed 24 pounds (10th percentile) and was 36 1/4 inches (90th percentile). The Dr seems to think he will be around 6 foot 2. How they figure that, I don't know. He is still our loving, hugging, kissing little man though. I will try and post some pictures later tonight from our trip to ATL.

Please continue to pray for all the families that have lost their children to cancer. Pray for those that are going through treatment as well. Go donate blood/plasma.

Answered Prayers

Dr Rozzelle came by and said "NO surgery is needed right now". There are some cyst but they are doing no damage and something has to take up the space where the tumor was, so cyst it is.

Praise God, NO surgery.

Hearing test

We just got back to our room from having Xavian's hearing checked. He didn't do so well. The results show that there is some change in his hearing from the last test. I am telling myself that it's because they woke him up during his nap, he thought he was hungry and he had an explosive diaper. I am going to ask that they recheck him later today or tomorrow. I am also wondering if the Methotrexate is making him irritable.

Tomorrow is big brother Dante's second birthday. Grammy (Matt's mom) will be here tomorrow afternoon to stay with Xavian while Matt and I take Dante to Atlanta for the weekend. We are going to stay with Matt's sister, husband and their two boys. Saturday we will take Dante to the aquarium. I think we are all looking forward to that. I'm also looking forward to seeing Dante tonight. He's been in Montevallo with my aunt and cousin since Monday. He has been going to their church's VBS all week. I hear he loves the music, showing off his dance moves I'm sure.

I met a mother here whose 5 month old little boy was just diagnosed with AML. I remember the day we found out Xavian had cancer and know exactly what she is going through right now. Please pray for Colby and his family.

http://www.caringbridge.org/visit/jacolbykeonvaughans

Still waiting to hear from the neurosurgeon...

I have also set up a CaringBridge site for Xavian (it's been up for a month I guess)

http://www.caringbridge.org/visit/xavianbecketthall

Room 449

We are finally settled into our room here at Children's in Birmingham. Xavian is napping (he needed one in the worst kind of way). He is now getting his fluids. Tomorrow they will check his urine and begin the MTX. We will also be seeing the surgeon while we are here. Most likely tomorrow. Dr Reddy said that Xavian's soft spot seems to be a little full so they will keep an eye on that. Also, PT/OT will come by and evaluate Xavian. I let them know that I was concerned that he isn't reaching for objects. He is also not sitting on his own. He will sit for a few seconds but then fall to the side. Hopefully they can work with him and get caught up and it's not a balance issue because of the fluid on his brain.

Specific prayer request:

1. Xavian will be able to clear the MTX so we can finish this round

2. The surgeon clears him to finish this round

3. NO mouth sores

4. NO allergic reaction to any of the chemo drugs

5. Safe travels and Matt and I take Dante to Atlanta for his birthday

6. Xavian won't have a break down while his Grammy stays with him this weekend

7. Tucker Beam and Megan Brittian's families
http://www.caringbridge.org/visit/meganbrittain
http://www.caringbridge.org/visit/tuckerbeam

8. All the other families that are in this fight and on this floor

Another joins our Savior...

Please pray for Megan Brittain's family...

http://www.caringbridge.org/visit/meganbrittain

3rd round

I just got off the phone with our oncologist nurse practitioner and we will begin the 3rd (and prayerfully final) round of chemo this Thursday. We will go to clinic Wednesday to be admitted and be on fluids all day. While we are there Xavian will hopefully be seen by the neurosurgeon. This will be a lot easier on me too. I originally couldn't get us in until June 11th. Dr Reddy said it's more important that he go ahead and get this 3rd round started since it's not pertinent that he have the surgery right away.

We had planned on taking Dante to the Atlanta aquarium this weekend for his 2nd birthday. I should know by now that God has other plans. Matt's mom has volunteered to come stay at the hospital for a day or two so that we can still take him.

I'm not really looking forward to the nights on a pull out bed/chair at the hospital but I will do what needs to be done so that Xavian can be well again. There are families at Children's that have been there longer than I even want to think about. Please continue to keep us all in your prayers as we are all in this fight together.


X Man and Daddy




Loves the grass between his toes (look at those thunder thighs)

6 months

Wow, I can't believe that Xavian is already 6 months (and five days). The past three months have just flown by. It's been a tough three months but I am so grateful that we have gotten to see Xavian turn 6 months.

Things I never thought I would have to do for, hear about or see my child go through before turning 6 months...

1. "You need to come to the hospital ASAP, your son has stopped breathing (but has been intubated)" Not the best way to tell a parent to come to the hospital (during rush hour).

2. Your son has a mass on his brain...this mass is cancer (less than 40% chance of curing)

3. giving daily shots (although Matt takes care of this one)

4. toxic chemicals being pushed into his blood stream

5. having a blood/platelet transfusion

6. having ulcers cover the inside of his mouth all the way down his GI

7. having a feeding tube put down his nose, bypassing his stomach into the intestine (I had to hold him down while this was done), and having to learn how to use the feeding pump to give him proper nutrition

8. losing his hair, eyebrows, and eyelashes

9. sleeping through the night for the first time in a hospital crib

10. having to remember what medicines to give and when (at one point we were giving him 7 different meds at one time)

11. having to clean, flush and properly take care of his central line

All these are things Matt and I are willing to go through to have Xavian with us today. Matt, Dante and I are so blessed to have him here with us.

Philppians 1:3-6

This path we are traveling along is all a part of God's plan for Xavian's life and the life of Matt and I as his parents. I am grateful that I get to call Xavian my son.



Xavian and Dante




Cousin Darnell comes for a visit



Darnell wants some of that food you are getting Xavian

I just heard from our nurse that the surgeon doesn't think Xavian needs surgery right now to remove the fluid. He does want to keep an eye on it though and wants to check him out before starting the third round of chemo. As of now that appointment is for June 11th. I will take him back to the clinic to have his counts checked though. Xavian is rolling from belly to back and back to belly now. He can just about sit up on his own. The only thing I am concerned about is that he isn't reaching for things yet. He will bring his hands to his mouth and eyes to check them out. And, of course he will push up on his arms when laying on his belly. Who knows, maybe I'm paranoid (I have reason to be). That's about all he will do with them right now. I'll have this conversation with the surgeon too. You can't understand how relieved I am that he isn't going to need a 2nd brain surgery right now. Although, I'd like to get the 3rd round over with I am super pumped about being home for such a long time.

Everyone have a wonderful weekend and tell those babies you love them!

Prayers for Tucker

I am asking all of our prayer warriors to please pray for a little boy here in AL that needs some prayers lifted up RIGHT now...

http://www.caringbridge.org/visit/tuckerbeam

MRI Results

Today started very early for us, we left our house at 5:30am for Xavian's MRI at Children's Hospital. This early departure would have been challenging normally, but it was extra challenging this morning because Dante had been up throughout the night. He's got pink eye and a double ear infection. Cassie got a migraine late last night, but the medication she took last night and this morning didn't work, so she's been vomiting most of the day and is now pretty much immobilized. I went to the urgent care clinic in Trussville last night because I felt horrible and found out that I have strep throat. Xavian, surprisingly is the healthiest of us all right now.

Xavian's anesthesia went well this morning and the team was able to get all the detailed pictures they needed with the MRI. We waited for approximately an hour before our doc came in with the results. We all slept the whole time. The results of the MRI showed a significant decrease in the residual tumor. Doc told us that it looked like most of the tumor was gone and that she was pleased with how it looked and how he looked and it was all good news. She also talked to us about a possible procedure for removing fluid from a small pocket where the tumor had shrunk into protein type matter (or something like that). It's something they expect, but sometimes they feel it necessary to remove some of the fluid, but not all of the fluid. That part was a little confusing, so we'll have to do some research to get further clarification. Doc seemed upbeat about everything and said that she didn't know if we would start the next round of chemo next week or if we would do the procedure to remove fluid next week. Our nurse practitioner will call us and let us know in a few days.

I've had a ton of text messages and calls, but I haven't really been able to respond to anyone, but just know that we really appreciate everyone's thoughts, prayers, and caring. It means a great deal to us and it makes a difference, there's no doubt about it.

Dante is feeling much better today than he was yesterday, so he went with his Nana to Montevallo for the rest of the day and tonight, so that Cassie and I could get some rest since we're both feeling pretty rough. Xavian has been a wild man since we got home and is now resting, so hopefully Cassie and I both can take a much needed nap and start feeling better.

Thanks again for all the prayers. There is still more work to do, so please continue to pray for healing and strength.

The good news is very refreshing!!

MRI

Xavian is have the MRI done as I type. It should take about 30 minutes. They did have to sedate him so he would be still. Kind of hard getting a 6 month old to be still without sedation. Once he is out and awake I can feed him (he was getting pretty hungry since he hadn't eaten since 11). We will then go back down to clinic to go over the results with Dr. Reddy. I wasn't anxious about the results because I thought it would take a few days before they would tell us. Now that I know we will find out in an hour or so I am all of a sudden anxious.

I will update as soon as we get home and settled back down. Please continue to pray...

Clinic

We are back home. Didn't have to stay long this time. Xavian didn't need any sort of transfusion today. Numbers are starting to come up. His ANC is still low (406). This needs to be at least 1000 before we can start the last round of chemo. More than likely it will get pushed back a week. Although I enjoy being home I'd rather start this last round and get it over with and behind us. We go back to clinic on Wednesday at 1pm. Xavian will have more labs done and we will meet with Dr. Reddy to determine what our next step will be. The MRI is scheduled for 3 that afternoon. We will try to post something shortly after all that.

Dante update - Matt got him to go to bed last night without his paci. He has also gone down for his afternoon nap today without it. I thought it was going to be a lot harder than it was. Both he and Xavian are growing up too fast for me! Xavian will be six months on the 24th of this month and Dante will turn 2 June 5th. Where as the time gone?

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Dante meets Xavian for the first time

Dante Pierce Hall 6.5.2007

Xavian Beckett Hall 11.24.2008

Pictures

Doing a happy dance because we are going home after "living" two weeks at CH.



A few of our favorite nurses and and my friend George Noah



Dante was excited to see baby brother at home. Xavian doesn't look so excited, but he was.



A daddy and his proteges.



Mommy's boy.



Xavian and his full belly



Getting so big!



Dante helping daddy water the grass (before all the rain started).



All smiles.

A long day

This morning I had to have Xavian at clinic for lab draws at 8:30am. We got there and had the blood drawn in no time. He has gained one pound! We waited a bit and got called back to a room. The nurse told me that Xavian was very neutropenic. His hematocrit levels were down from 29 (when we left the hospital on Wed) to 22. One of the doctors came in and told me he would have to get some red blood before we left. Ok, no big deal. The thing is they didn't have blood ready for him so we waited nearly 1.5 hours to have the blood delivered. Xavian's blood type is O+ and he is CMV- so, it takes a little longer to match him. If you know you are CMV- please donate. Most infants/children are negative and those on chemo NEED blood and/or platelets. You can also donate for a specific person (Xavian or Ryan). Anyways, Xavian was finally hooked up and started the transfusion at 12:45pm. The transfusion wasn't complete until 4:15. Other patients came and went...we were the last ones to leave. Only a few nurses were still there when we left. We will have to be back at clinic on Monday to check his levels again. If his numbers aren't up to a certain level they will post pone the last round for a week until they come up. We have an MRI scheduled for Wednesday at 3pm. This will take place even if they post pone the third round. I am a little anxious for the MRI. Our nurse practitioner also said they may lower the dose of chemo that Xavian has been getting. I'm not quite sure why that is though.

Xavian and I finally got home at 5pm. Just in time to run next door and pick up Dante. Our neighbors have been so generous and helpful while we are going through this. Our friend had to go substitute at her daughters school so she just took Dante with her. Matt said she was a little anxious about having him there, she wasn't sure if he would get upset not knowing her that well. When I picked him up she said he is so laid back that he just went with the flow (they were on the go all day). He didn't have a nap at all so I am hoping he sleeps well tonight.

We don't have anything planned this weekend. We need to keep Xavian in since his immune system is pretty much shot. We will just be at our new house enjoying our new furniture as a family together again.

Busting out...

The Dr. just came by and said we can go home! YAY! I did a happy dance and the nurses laughed at me. Xavian's numbers aren't were they should be but they said we've been here long enough and he hasn't developed a fever so, we can go. We will have to come back to the clinic for labs on Friday. Then we have the MRI scheduled for next Wednesday at 1pm. We will also be admitted Wednesday and start the last round of chemo on Thursday (May 21).

Xavian is sleeping so I am going to pack our things. You'd think we actually live here with all the "stuff" that accumulated.

Hospital fold-outs are for criminals

Xavian is doing well. He slept fairly sound last night, but it seemed like nurses or CAs were coming in every 10 minutes. It just seemed that way. Some of his counts are up, but not all of them, so we're still in the hospital. It's been almost two weeks since we were admitted, but some families are here for months at a time and live several hours away instead of 15 minutes away, so it could be much worse. It could always be much worse! It's like they told me when I was a kid. You may think you're tough, but there is always someone else out there that can kick your butt. Not sure what that has to do with anything, but I thought it was funny, still do.

Anyway, Xavian's white counts are higher today, so that's great news. Usually once those counts start rising, they seem to rise to a safe level on a steep grade.

Peace.

The Zoo, Mother's Day, Furniture, Low counts...

I got a zoo pass so Dante could have some fun this summer while we are back and forth to the hospital. My aunt (Lawana) and cousin (Sarah) went with Dante and me this past time. It took him a little bit to get use to the water area. Once he did, he LOVED it!




I hope everyone had a great Mother's Day and celebrated with their mothers. Thanks to Matt's mom (Vonda) I got to spend this day at home with Matt and Dante. It was very uneventful. That was fine with me. I need some uneventful days. Vonda came in town Friday around 1:30 and relieved me from hospital duties. She stayed here until Sunday afternoon. It gave Matt and I much needed break.

Saturday we got some of our living room furniture and wall prints delivered. Wahoo! Now when you come to visit you will have a place to sit. ;) We are still waiting on some of our other furniture but, it's looking more like a home to us. We are also looking at getting a fence put up. That will be nice so Matt won't lose Dante anymore (that's another story).

Xavian is doing well. He received some platelets today. It wasn't totally necessary but there were some at the bank that would expire tomorrow so they went ahead and gave them to him. I encourage anyone that can donate blood/platelets to do so. His WBC is still zero but the ANC has gone from zero to 150. We are praying this will be the turn around and his WBC will start to come up so we can go home. We have now been at the hospital for 11 days waiting for counts to come up. We've been through 4 tornado warnings, moving out to the hall every time. We did get to spend nurse appreciation week up here though...Dante made cookies for all the nurses. He's a big flirt when he comes to visit. I guess Xavian learned that from Dante. The nurses and C.A.s love to come get Xavian and take him to their station. Matt and I love it too because it gives us a break.

Please continue to pray for Xavian...his complete healing but more urgent, his WBC to come up. Also, we have met so many other "c" friends either here on the floor or down in the clinic. Please pray for those that are also going through treatments, procedures, relapse, and remission. Thank you to all our blog followers for praying faithfully. One day Xavian will be able to understand the power of your prayers.

Resting

Xavian is at Children's Hospital resting in his room. It was an eventful day for him. Nurses freaked out as Cassie stayed cool, haha. Hopefully, we can come home from the hospital very soon and be together at home for two or three weeks before Round 3 begins.

We're all exhausted. When one of us is at the hospital and the other is at home, it's very challenging. I have an entirely new respect for single parents!! I also think that whatever bacteria or virus that made Xavian's temperature go up, also may have attacked Dante and I. Neither of us had much of an appetite and we're both extremely lethargic and tired. Kinda freaked out with all the talks around the Swine Virus!!

More updates to come later this week. Thanks for all of your prayers.

Inevitable Return to the Hospital

Today the inevitable happened, Xavian had to go back to the hospital b/c he was running a low grade fever. By the time Cassie got him to the clinic at Children's Hospital, his vitals were out of whack and his fever had gone up. He received platelets, fluids, and antibiotics. The antibiotics were precautionary since his white blood cell counts were so low. His fever has since dropped closer to a normal range.

We thought Xavian might have to stay in the Special Care Unit, but his vitals stabilized, so he'll probably just go to the oncology floor where we usually are, which is a good thing.

Hopefully he'll feel better and his vitals will remain stable and we won't have to stay long.

Please continue to pray that the good cells in his body can fight off the chemo and the bad cancer cells will wilt and die and that mommy, daddy, and dante can remain sane (or get back to sane).

Still home

Xavian and I just got back from clinic. His numbers are still very low-this is expected. He did not have to have a blood transfusion though. We will have to continue to watch for fever (100.5+) and bleeding/bruises. We are also limiting visitors right now and making sure that if anyone does come by they haven't been sick or haven't been around anyone that has been sick. I will be walking around with a can of Lysol for a few day too (thanks Regina). We will be heading back to the clinic Wednesday for another CBC. They suspect that he will have a blood/platelet transfusion then too. While we are there he will also get Vincristine (chemo drug). That is only an iv push though so we shouldn't be there long. If Xavian doesn't get fever (please pray he doesn't) then we won't have to be back at the hospital until May 20th. At that time they will do an MRI to see how the cancer is responding to the chemo. This will be the first MRI done since we first found out there was a mass and it was malignant.

Some friends in Jackson, MS found out their son had cancer right before we found out about Xavian. Please pray for them as well. You can read their blog here...

http://www.troyandvic.com/our-blog/

Round 2 Complete

I haven't posted in a while, sorry about that. We've been swamped. Lots going on.

Xavian's second round of chemo went very well. We were only in the hospital eight days. He cleared his MTX and handled the rest of the protocol very well. We were discharged Thursday and have been home since then. Xavian is feeling great and has done very well at home. He's been watching a lot of Baby Einstein and loves it. He hasn't gotten mouth sores and hasn't had fever, so that is a blessing. He's had some congestion and has vomited mucus from it, but has eaten well and seems to be gaining his appetite again. Tomorrow, he has a clinic visit for blood counts and a checkup. Hopefully everything will look good. We expect his white blood cell counts to be very low at this point in time.

So, for now we're home and doing well. It's so nice to all be here. I get a sick feeling when I think about having to go back to the hospital again, ugh. It has really worn on us, but I guess it's not supposed to be fun right :-\

We'll post again soon, maybe a "Dante Update" or something. Dante is doing great by the way. He and I went to Northpark Church in Trussville this morning. He had fun in the nursery and the service was cool, although I was dog tired.

Peace.

4/21 Update

This morning, before starting the chemo, Xavian will get a blood transfusion. Not sure how long that will take but we are still waiting for the blood to get here. He has a little more energy than he did yesterday after the chemo. He's not quite as pale either. Hopefully the blood will give him an extra boost. We will finish up this round tomorrow morning. Looking forward to going home Thursday morning (praying nothing goes wrong to keep us here). Once we get home we'll have to keep an eye on his temperature and make sure he's eating well. The night feeds will help a lot though. I think Xavian is ready to be in his swing at home and to be able to get on the floor and roll around. I know I'm ready for us to all be home together again.

Pictures and more...

I wrote an update on Xavian below but wanted to show some pictures of our week home together.



Going for a walk


Dante's walk in Granddaddy's pasture


Xavian happy to be home for Easter


Dante and his finished eggs


Dante and his eggs


Xavian and his find of the day


Dante is glad baby brother is home for Easter.


cat nap


Thanks to those in PA and all around for the wonderful prizes for Dante


Xavian on the way to start round two

Don't forget to read the post below for an update on round 2.

Moving on

Xavian's MTX level was down to that magic number (.1). We are now an hour into the next chemo drug that runs for a total of 4 hours. He's been sleeping most of the time because he was given benadryl to keep any allergic reaction that he may get down. Last time he got a rash so they also gave him a steroid to see if that helps. They keep a bp cuff on him that goes off every 15 minutes so he sometimes stirs then. If everything goes like it did the first round we should be able to go home either Wednesday or Thursday. Praying that when we go home we will get to stay more than one day. I expect him to have a blood and/or platelet transfusion before we head home. Thanks so much for the continued prayers.

Weekend Update

Xavian had a good day yesterday. He's looking good and seems to be feeling well. He laughed, sat up, and wiggled about a lot today. His Methotrexate levels are going down at a faster pace than during the first attempt at Round 2, so that is a blessing. Allison, our nurse practitioner, feels like the Methotrexate should clear his system by Sunday, which will be good because Xavian can then receive the remaining chemo medications in the protocol.

Not much else to report at this point. There are a ton of wet diapers to change due to the fact that Xavian is being given lots of fluids so that he doesn't get dehydrated and so the Methotrexate will clear his system more quickly. I changed about six diapers each of the last two nights.

Keep the prayers coming. Pray without ceasing (1 Thessalonians 5:17).

MTX

We finished with the MTX and his level came back at 905.70. He will now be getting leucovorin until that level gets to .1. Hopefully this will be Sunday and we can continue with the rest of chemo. Right now he is resting well. When he's awake he is so happy and talkative. Let's pray it continues to stay that.

Thanks to Terri and Ellory Sue for keeping Dante company this week.

A little video from before we came back to the hospital for treatment...

Redo

I will update more later (so sleepy, long night) but, Xavian started the MTX this morning at about eight. It will run for about four hours. They have increased the fluids so that hopefully this time he can clear the MTX in time to finish this round. The increased fluids makes for a very wet diaper just about every hour. So, at night I have to get up frequently to change his diaper. He usually doesn't wake so that good. Only once did I have to change his sheets and clothes and that was at eight this morning. It's going to be a long day for sure...

Round 2 Cancelled

We were discharged Saturday morning as Xavian's Methotrexate levels reached a safe level for us to go home and let his body recover for a few days before restarting the 2nd round of chemo. These chemo protocols are designed to work in specific ways. In the protocol that is being used for Xavian, the different chemo drugs work together to achieve a goal. If one of the drugs doesn't or can't do it's part, then the entire protocol is in jeopardy. That basically describes what happened during Xavian's 2nd round of chemo. The Methotrexate didn't do it's part because something in Xavian's body wouldn't let it leave. The Methotrexate levels stayed too high for too long and the safest thing to do once it was at a safe level was to let Xavian's body rest and prepare for the next round. Some of his cell counts were lower than normal range, but the counts weren't too low to continue the 2nd round, the doctors simply didn't want to give Xavian more than they thought his body could handle. While this is an extremely aggressive set of chemo treatments, they doctors are being very careful to not give Xavian more than his body can handle. As you can imagine with a four month old, it's a difficult balancing act. That's why they make the big bucks.

So where do we go from here? Wednesday we will visit the clinic to see if Xavian is ready to start the 2nd round again. Let's hope he can start and we can knock this cancer out! As much as it sucks to live half your life in a hospital room, we'll do whatever it takes to get Xavian healthy!

We're at home trying to rest. We're still in transition mode after recently moving into our new home, so it isn't where we want it to be yet, but it is a home and we do have plenty of room now, so we're thankful for that.

Dante continues to be a wild, sweet kid and is doing well. We're thankful for that as well. It's about time for him to get another haircut. I think his hair grows faster than his mom's hair.

For all of our prayer warriors out there, please continue to pray for us. We need the following...

• Patience


• Strength


• Healing for Xavian's body


• Rest for Cassie and Matt


• Feelings of security for Dante when Cassie and I are away from him


• Ability for me to take care of my family and balance everything else in life (work, health, financial, etc.)
  

God Bless!

Levels up again

The MTX level has gone up again today. As of this morning it's at .4. Now we are trying some of the other options. As I sit here and type Xavian is getting charcoal through his feeding tube. It will be given over an hour and a half. Hopefully this will bring it down.

In the mean time they want me to stop breastfeeding for the day and only give him formula. This is going to be a challenge in it's self because he won't take a bottle. I just tried before they started the charcoal and he didn't want anything to do with it. He finally just fell asleep. He's in and out of sleep right now and I can tell that he's hungry. If he continues on like this they will feed him through the tube (that's why they put it in). They are also going to do an ultrasound on his belly to make sure there is no fluid that could possibly be holding the MTX.

He still has not gotten any mouth sores...praise God. They will draw blood for another MTX level at three. I will try and post as soon as I know something. Well, I smell a poopy that needs to be changed (they put a laxative in the charcoal).

A Long Day

I don't even know where to begin...

I probably should be sleeping right now but, as soon as I fall asleep something else will happen. I got to the hospital at nine to relieve Matt so he could go to work. In the process of switching out Xavian pooped all over the place, then peed on the shirt we changed him into, all the while transport was waiting to take us down to Xray.

It was a quick trip down there an back. Thank goodness. The doctors put an order in for the xray because Xavian's methotrexate levels still had not gone down - after increasing the Leucovorine (rescue drug) and iv fluids. They were checking to make sure he didn't have any fluid build up in his chest - causing the methotrexate to sit there. Results - no fluid.

Once we returned to the room they came and gave him another dose of the Leucovorine. After 30 minutes they came back for labs to check the MTX levels again. I was saying some prayers so that we could move on to the next drugs. Results - levels went back up. It's so frustrating! He had been so happy and more active the past few days. How could he not clear the MTX with all the peeing he'd been doing?!

At the end of the day (five for most people) our wonderful nurse practitioner came in to let me know she had spent three hours reading and researching MTX and how it's excreted from the body and what our next step would be. She was perplexed as to why his levels would go back up. She asked if I was taking any suplements that could be passed along through the breastmilk. Nothing. Not even the prenatal vitamins I should take while breastfeeding. His levels aren't dangerously high but it's at the tail end where they should be back to normal by now. She wasn't too concerened with that. What she was concerned about (and I quickly became concerned too) was the delay this would put on Xavian's treatment. I was also concerened with the mouth sores. Would their onset be quicker than the first round? Would they be more severe? She could almost be certain he would be getting them again; if not sooner. They were pretty severe last time. She couldn't emagine anything worse than that. If the levels aren't back down by the time he gets sores we would have to wait to start the other drugs. This could take a week (as it did last time). Because of that, we would have to start round two all over again. You see, for this treatment to work he has to get the drugs within a certain time frame. They can't give the cells a chance to start dividing again. Again, it's all very frustrating because Xavian will have to go through all that pain one too many times.

The nurse practitioner went over all the options with me. One, she had read an article on, is to give Cholestyramine. It's used to lower cholesterol but she found this article and talked to some other nurse practioners that had used it to bind with the MTX and pass through the body. Sounds good to me. Better than the option of using charcoal.

So, Xavian has gotten a dose of Cholestyramine and an increased dose of Leucovorine. He will get more blood drawn at midnight to check the MTX level and then again in the morning (eight). Please pray the level will be where it needs to be (.1) and we can move to the other drugs before he gets mouth sores. Sorry for the long post, it was a long day...

Question...Why do the nurses wait until 11pm to get boisterous?